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formysister

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Jul 24, 2013
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Loved one DX
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US
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MD
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Anytown
Hello all,
As my username implies, I've lost a sister to ALS (I would presume bulbar onset) 2 years ago when she was 57 years old old.

Now, I'm completely terrified that I may be having early symptoms as well. I am 45 years old and a health care practitioner. Being knowledgable with symptoms can suck big time because it can be easy to identify with them.

My symptoms began months ago with perceived stiffness of right forearm. I noticed it while watching a movie. I also had a one time episode of a fasciculation of my right pointer finger. No real weakness seen.

Subsequently, I began to notice I was tiring easily. (legs felt rubbery, felt sleepy all the time)

Then came Memorial Day week when my "bulbar symptoms" began. It began harmlessly as having a moment of forgeting how to swallow. Things went downhill from there. My swallowing issues became more frequent (still the forgetting how to swallow sensation, the occasional lump in throat, the sensation of food still stuck at the back of my throat). I began to lose my appetite and started losing weight from 176, now down to 169 with both loss of fat and muscle mass. My sleep is now affected. Cannot sleep straight, difficult time going back to sleep.

Paranoia set it. I began doing the tongue/soft palate evaluations (could still whistle, albeit never was great anyway, can move my tongue around without difficulty, no apparent fasciculations noted). I am not slurring, but wife notes occasional hoarseness. I've also started testing my motor strength. I could do 3 reps of 35 pushups, one leg standing up from sitting (left greater than right) and balancing oneself on the ball of the foot one foot at a time greater than 10 seconds.

Finally visited an internist, told my symptoms to which he did a neuro exam. He didn't find anything remarkable. Did some labs, found out I may be pre diabetic and may have some cervical and lumbar arthritis. He referred me to a neurologist. She did her neuro exam as well. She initially was ready to do an EMG but decided otherwise since she said there was nothing found in my neuro exam to warrant it. Both docs attribute it to anxiety.

But she did refer me to a speech and language pathologist (who has seen a lot of ALS patients) to which she only noted my larynx as tense which may explain my hoarseness.

Now, I am following a grief counsellor (Speech pathologist thinks I really haven't gotten over my sister's death) and have seen a psychiatrist because of my anxieties.

The gagging has become more frequent now. Initially, it was to bananas or soft mushy food. Now it happens whenever I force myself to eat even when I don't feel hungry. I could still eat without choking. Can this be from anxiety?

I am a mess. I have 3 young kids (5, 4 and 2) who I don't want to leave behind. I really wish to GOD this is because of anxiety. HELP!
 
I think you should try some anti anxiety meds. Anxiety can do terrible things to your body. Go talk to your psychiatrist about some meds. Keep up with the grief counselor. It sounds like you are on the right track. It may just take some time. Maybe ask about some relaxation technics to help. I wish you peace and I am very sorry for your loss.
 
I think you should try some anti anxiety meds. Anxiety can do terrible things to your body. Go talk to your psychiatrist about some meds. Keep up with the grief counselor. It sounds like you are on the right track. It may just take some time. Maybe ask about some relaxation technics to help. I wish you peace and I am very sorry for your loss.
Thank you, Vicki.
The grief counsellor helps. I always end up bawling to her whenever I discuss my sister.

I was started on Effexor by my internist but it took a terrible toll on my GI tract(belching, diarrhea,bloating, no appetite). That didn't help with my anxiety, I tell you. I'll do whatever they tell me. This ordeal is already taking its toll.
 
Crying is a good thing, it shows how much you loved and cared for your sister and it is a release for you. See if there is a different med you can try, something to help you get through all this.

You are on the right track. You just have to find a med that works and relax. Have patience, it takes time just breath in deep and release the breath slowly. Look at your family and believe that you will over come this. Life if good.
 
I was just put on Effexor and it is making me feel absolutely terrible. I have vomitted and also have diarrhea with it as well. I was on Paxil before I totally thought it worked alot better. Each person's chemistry is different though on what their body can handle. I am so sorry for all you've been going through and the loss of your sister. We are here to listen and support you the best we can. Kim
 
Thank you, Kim! My psychiatrist suggested I switch to Lexapro. You're right. It is trial and error with the meds.

It truly is horrible situation right now thinking all these symptoms are the beginning of something bad.
 
I hope the anxiety medication helps and the symptoms disappear!
 
I wonder if anyone else have had similar symptoms as I did which turned out to anxiety driven?
 
I started anxiety meds and while it hasn't helped my symptoms lesson, it helps me not fixate on them to the degree I was before. So definitely it helps!
 
I started anxiety meds and while it hasn't helped my symptoms lesson, it helps me not fixate on them to the degree I was before. So definitely it helps!

Thanks! I appreciate your input. Just one day of a symptom free eating pleasure with weight gain is heaven.
 
You can use the iSwallow app and try all the exercises. If one is particularly hard focus on it and do it gradually up to 10 times 3-5 times a day. Anxiety can cause all this as well as not eating well, not drinking enough water, cervical spine issues can also contribute to all the swallowing and the lump feeling.

Start by holding the tip of your tongue in your front teeth and swallow 10 times. You will hear a "squish" noise each time. If it is hard to do keep doing it. This will exercise the initial swallowing muscles. If that helps lay on your back and lift your head till you see your toes. Hold for 60 seconds. If these help then it is weakened muscles for whatever reasons. Strengthen muscles until they find something that says stop.
 
You can use the iSwallow app and try all the exercises. If one is particularly hard focus on it and do it gradually up to 10 times 3-5 times a day. Anxiety can cause all this as well as not eating well, not drinking enough water, cervical spine issues can also contribute to all the swallowing and the lump feeling.

Start by holding the tip of your tongue in your front teeth and swallow 10 times. You will hear a "squish" noise each time. If it is hard to do keep doing it. This will exercise the initial swallowing muscles. If that helps lay on your back and lift your head till you see your toes. Hold for 60 seconds. If these help then it is weakened muscles for whatever reasons. Strengthen muscles until they find something that says stop.

Thanks, I'll try it.
 
Another day of gagging and lack of appetite. It's really dampening my spirit.

I know most have mentioned how anxiety can manifest itself in weird ways but a part of me persists in fearing ALS with gagging as its early sign.

I've never had a manifestation of anxiety to this level before. Hope the Lexapro that I switched to helps!
 
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